Ok, not a good night for diabetes in my house I really would just like to vent as well as ask for some help problem solving with sugarmate, tagging @ClaudnDaye because I think of you as our resident sugarmate expert. So my numbers last night:
Not pretty at all. I do believe my sensor was reading a little bit lower than I actually was, but still, not a good night. I had issues falling asleep last night and when I did fall asleep was pretty fast asleep. I slept through the regular dexcom and sugarmate alerts (as usual), some shown below to show that sugarmate was on and running:
My mom received I donāt know 5? 7? Texts last night from sugarmate telling her Iām below 45. So she came into my room and woke me up all of those times. I treated and went back to bed for each (as I usually do) and got more and more frustrated each time (as Iām entirely independent with my diabetes management and donāt want my mom hovering over me, donāt want my mom worrying, donāt want my mom not getting sleep.) I have sugarmate set up to call when I go below 60 at night, so usually if Iām going low at night Iāll catch it before Iāll go lower and my mom will get a text.
However, I didnāt get one phone call last night from sugarmate, and Iām just frustrated with it because Iād felt a lot more safe having had success with it in the past and that feeling got kind of turned upside down now. Also Iām like frustrated having to explain each time to my mom that if sheās getting a text saying Iām low it doesnāt always have to mean emergency because usually Iāve already treated it or Iām letting it ārun lowā since Iāve tested my blood sugar and am actually not low, followed with monitoring via finger sticks. And I get it sheāll probably worry no matter what I say, but it just makes me feel guilty and frustrated when she gets these alarms, especially for scenarios like this that I thought I was safeguarded for and could have prevented. I know I probably sound like a brat because sheās doing everything to help me and that was incredible last night and I know that she canāt just turn off worrying, but I donāt love the idea of someone else getting alerts on my blood sugar (and sugarmate not even calling me like I see who it likes better here!!) And Iām frustrated that I dont have my whereabouts with me when I wake up to lows and managing them better than treating and going back to sleep. I really do though when I get that jarring call from sugarmate though sigh and this is the end of my ted talk on why I wish I had a t-slim x2 that could successfully suspend my basal throughout the night
Ugh and now I see myself complaining about this amazing technology and feel guilty about that. Maybe itās time I go back to guardian sensors for a bit, get some much-needed perspective (and then there I go complaining about other technology that I should be grateful for!)
I think itās just a ācomplain about my diabetesā kind of day so probably best I sign off for the rest of the day but I would love opinions on sugarmate as well as handling the āfollowerā relationshipā¦ there must be a thread on that that Iāll go hunting for later
I completely understand feeling the loss of the safety net.
Nope. You donāt sound like a complainer to me.
I was just having this talk with someone yesterday. Our target is always moving on us. Well, at least mine is always moving on me. This is a marathon. Every day demands our attentiveness in one way or another. And you do that. And you use your tools and you rely on them. And when they donāt function as weāve come to expect them to, that messes some things up.
After experiencing enough long term issues with sensor accuracy, site integrity, etc, etc, I still keep myself in a pretty basic nuts and bolts, manual approach to my management. The bells and whistles are awesome when they work. But when they donāt, I need to be in touch with my skill sets to make up the difference.
All of that is to say, I, too, have come to feel safer at night because of the Sugarmate phone calls. But I had a night a few weeks ago that I lost sensor signal all night and never woke up to that Dexcom alarm. I happened to be steady enough overnight that it turned out fine, but waking up and realizing how many āsignal lossā screeches I had completely slept through was a bit jarring. Because obviously for me in that case, Sugarmate wonāt be making any calls to me without data.
Totally understand being frustrated. Totally understand the loss of security in this moment. I canāt speak to the aspect about how this all works with another person following your alerts bc I donāt have that dynamic in play, but I can understand your concerns there. I wish I knew why Sugarmate didnāt call you last night. That is definitely something Iām curious about seeing what others posit. But I think enough of these types of experiences myself have led me to be in the camp of appreciating the technology but never fully relying on it.
Get used to it. My wife is the Dexcom follower, and after years and years of marriage she still tells me to go take my blood sugar and eat something when I have a compression low.
@LarissaW, sorry this happened to you! Are you certain you received zero calls? You should check your call log to be sure. There are nights Iām so out of it that SM calls me and I click the hang-up button without even realizing it was a low call. I donāt think Iāve ever NOT gotten a call!
What I have done; however, which has caused lows, is not putting our settings back where they should be before bed. For instance, during the day we have his Normal Range set at 60 - 180, but during the night we move that low up to 100, so that we get calls when heās at or just under 100 so that we can treat if necessary if heās trending down. We do this so that he never actually goes lowā¦waiting to get that call at 60 means heāll typically already under 60. So, during nights where weāve forgotten to put that number up to 100, heās gone low and Iāve received calls late.
But if you genuinely didnāt get a call then Iām not sure what could have happened and Iām sorry to hear it! Most of the time the issue is ours, like I said we either had the numbers set incorrectly, had the phone on mute, or the volume was just too low to hear it.
Very sorry you had a bad night of lows. Maybe what you should tell your mom is thisā¦IF you are getting texts over, say an hour, and they havenāt started coming up yet, give me a call. That way, she could serve as a fail-safe to the technology?
I also havenāt changed my āsleep hoursā or low boundary on my range. And I didnāt have any signal loss throughout the night while I was low as you can see all my data is on the sugarmate graph
So Iām just not really sure what happened Iāll try deleting the app and setting it up again and will let you know if I can get the calls to come through. I remember getting a disclaimer from sugarmate when originally setting it up that said the calls may not always go through but Iād come to expect them because theyāve been successful until now
When you first turn on Sugarmate calls it gives you a little warning message: āThis is an experimental feature. Sugarmate canāt guarantee delivery of the phone call.ā
I would take that to mean that they (and by ātheyā I mean Josh, the guy who made it) are aware that sometimes it doesnāt work 100% perfectly. Itās a free app made by a good samaritan who is doing his best with it, but itās imperfect, so unfortunately Iām not sure if itās something I would rely heavily on
So far itās been 100% for us, but I do understand this app is as @glitzabetes pointed out and be very thankful for the 99.9% of the times is DOES work as intended! But again, I emphasize, you should ask your mom to certainly call you after X time has passed if you feel this could happen again in the future! As a parent, I would WANT my child to want me to do this for them!
Since the original post, I have re-established and tested the night phone calls for when I am lower than my low boundary. To do this, I turned off my Sugarmate āBelow Normal Callā alerts, restarted my phone, turned on my āBelow Normal Callā alerts (following the instructions, inputting my phone number), and then pressed the ātestā option in the āalertsā tab. I indeed received a call when I was below my low threshold at night after following these steps Iām thinking of incorporating this reset and test of my low night alarm once a week moving forward.
All of that being said, this thread got me thinking a lot about 1. how I reacted to that night of lows and my perception of a failed safety net and 2. the reliability of diabetic devices and technology to support. Both of which Iām going to talk about here below more so to sort out thoughts than to expect a conversation from this.
I am embarrassed for my whininess and immaturity in pointing fingers in my original post. However, I think that my despair and frustration when I woke up was a feeling Iāve had many times across the years and is one that I feel others may understand. At the end of the day, thereās no one app or person to blame for too low or high of blood sugar. Sure, sugarmate could have alarmed, but that sure as hell would not have prevented me from going low for a long stretch of time (as you can see from my graph even when I was treating and treating, I was stuck low). And sure, I could have not gone back to sleep and waited for my blood sugar to have gone up. But thatās just kind of how diabetes management is - each day Iām sure we all can find instances of āwell what if this.ā But thereās bad nights with diabetes. Thereās bad days with diabetes. Regardless of how well you stay on top of things or how well your supplies preforms. Thatās just how this disease is. And waking up the other morning, tired and sore from those lows, facing the reality that I could have died the prior night, and feeling the weight of keeping family members from sleep, I just did not want to believe that even with my improvements with my care that I could still have this scary event happen overnight. I donāt really know what else Iām trying to get at besides Iām sorry for being frustrated and whiny and taking it here and complaining about things that I really am very grateful for, but Iām leaving the post up because I think those sentiments are something Iāve faced and no Iām not proud of them, but I am working on accepting that Iām doing everything I can and Iām using tools the best I can but that doesnāt mean my diabetes wonāt have a mind of its own, and when it does, I can learn from the experience but donāt need to wallow in the victim role
As far as reliability goes - a couple people brought up that sugarmate is something they wouldnāt rely on because of the imperfections in it, as noted by the app when turning on different call alarms. Up to this point, sugarmate has been incredible, always alerting and calling, and saving me from scary lows or some potential highs. And I feel so thankful to have it in my toolbox because it really has changed my management. Though I do know now that it can slip up. But IMO all diabetes devices and apps have the potential to mess up. So I just donāt really get where the line should be drawn on when to rely on different tools in oneās toolkit and when not to. (I would argue sugarmate for me has been more reliable than my infusion sets and than guardian sensors and than glucose meters). IMO itās all personal on what to decide to use on a daily basis, but I guess I just shouldnāt have expectations of perfect performance out of any diabetes instruments. That seems kinda depressing but is just more pragmatic. I mean obviously we can do things to boost reliability out of our devices and supplies, but they all fail at some point. Just another layer as to why navigating the diabetes landscape is tricky. One day we can hope to have devices and tools that are 100% fail-proof ! But truly thereās been so much progress already in what we have that Iām super pumped about and thankful to have, and that just gets me excited to see what else is coming
IDK, crazy rant done and I can stop word vomiting on things ugh Iām sorry
I think all of your posts are fantastic and honest and thought provoking. I have never read anything youāve written as whiny.
Sugarmate has helped me tremendously, as well, and not just the night alarmsā¦although those are high on the list.
Iām glad to know youāve found a way to get it functioning again. And that youāve shared it here. Thatās the sort of thing that I think makes FUD engaging.
Also, sorry I totally missed replying above, but yes, my momās and my system that weād agreed upon when she started following my data was that thereās a 15-minute buffer after she receives a text for me to correct it and get myself back into a normal range before she starts calling me or finding me if Iām home. That has seemed to work pretty well for the two of us to both be comfortable. Though I do wish I could be entirely independent and feel safe that way, I do know itās best for her to be tagged in to help on ocassion
The unfortunate truth of diabetes if that this just isnāt possible āright nowā. Maybe one day the tech will be able to make this possible but for now just accept that this is NOT a burden for those that love you. Itās a labor of
I really would just like to vent as well as ask for some help problem solving with sugarmate, tagging @ClaudnDaye because I think of you as our resident sugarmate expert. So my numbers last night:
(and then there I go complaining about other technology that I should be grateful for!)
but I would love opinions on sugarmate as well as handling the āfollowerā relationshipā¦ there must be a thread on that that Iāll go hunting for later
Iāll try deleting the app and setting it up again and will let you know if I can get the calls to come through. I remember getting a disclaimer from sugarmate when originally setting it up that said the calls may not always go through but Iād come to expect them because theyāve been successful until now
So sorry this happened - one of my worst fears also.
Iām thinking of incorporating this reset and test of my low night alarm once a week moving forward.
